Episode 68: The Label Given to My MS Disease Course Matters to Me
Episode 68: The Label Given to My MS Disease Course Matters to Me
How much do the labels used to describe multiple sclerosis actually reflect the lived experience of people affected by the disease?
In this first episode of the new ECTRIMS–MS Journal collaboration series, host Dr. Anneke van der Walt, Controversies Editor at the Multiple Sclerosis Journal, speaks with Jon Strum, MS caregiver and host of the RealTalk MS podcast, and Kathryn Smith, patient advocate and volunteer with the National MS Society, and person living with MS.
Jon argues that disease labels shape perception, communication and expectations for people living with MS and their families. Kathryn explains why those same labels increasingly fail to capture the day-to-day reality of living with the disease.
They discuss:
- Why traditional MS disease course labels can feel disconnected from lived experience
- The emotional and practical impact of terms such as relapsing-remitting and secondary progressive
- The concept of PIRA (progression independent of relapse activity) and what it reveals about MS progression
- Why functional outcomes and patient experience should play a greater role in how MS is described
- The importance of patient voice in research, clinical conversations and scientific publishing
Although they begin from opposing viewpoints, Jon and Kathryn ultimately arrive at a shared conclusion: the MS community may need a new language — one that better reflects biology, individual experience and the realities of living with the disease.
Note: This episode is part of the MS Journal Controversies in MS series, specifically its new Controversies: Patient Voice section – a dedicated space highlighting the lived experiences of people affected by MS. Please see the following articles for more information: